Judging by his smile, which reaches from ear to ear, you wouldn’t be able to tell what kind of year it has been for Evan Taylor, who just turned 13 on Saturday.
Last February, Evan walked down stairs like any other morning. His mother Linda, alarmed by the sight of Evan’s eye, asked if he had been hurt.
“No,” said Evan.
A visit to the eye doctor prompted the family to pack their bags and head to Iowa City for additional testing.
An MRI revealed a malignant tumor had developed underneath Evan’s eyelid and he was diagnosed with rhabdomyosarcoma. Although a rare form of cancer, rhabdomyosarcoma is the most common soft tissue cancer among children.
Within a week’s time, the tumor was visible.
“They (the doctors) said they could not remove it because it would damage the muscle,” said Linda Taylor, Evan’s mother. “They were upfront with us right away and said it would be a long process.”
Evan and his parents were told by doctors there would be some rough days, but felt confident the treatment plan would help.
Treatment began within days.
First, Evan received a portacath; a small device that is surgically implanted under the skin, allowing him to receive chemotherapy and withstand multiple blood draws without constant pricking of needles.
According to Evan, having a portacath is not so bothersome. The port is something Evan wears like a badge of courage.
“You want to see?” asked Evan with a smile before pulling his shirt down slightly.
Evan has been receiving chemotherapy for one year, including a month of radiation last summer.
“The tumor responded to the chemo very well,” said Linda Taylor. “We noticed a huge difference within a week. You could see it shrinking.”
While receiving radiation last summer, Evan lived at the Ronald McDonald House in Iowa City. His father, Creston High School Physical Education Instructor Craig Taylor spent most of his summer break with his son.
Summer of 2012 was anything but a vacation for the Taylors. With Evan and his father in Iowa City, Linda and her eldest son Garret were holding down the fort at home. Linda commuted weekly, sometimes more, from Creston to Iowa City and back.
“That’s been the hardest part,” said Linda. “We are tired. Tired of the trips.”
According to Evan, the most difficult part about the process is being away from his family, and he described the experience as lonely at times.
“There wasn’t anyone my age there, really,” said Evan. “Babies and kids get cancer and older people get cancer. But there wasn’t really anyone my age. And people in the hospital don’t really talk to each other.”
Luckily, Evan’s sister Aubrey was attending college nearby at University of Iowa.
“She is wonderful,” Linda said of her daughter. “With Aubrey on campus, she could come over to the hospital when we needed a break.”
According to Linda, Evan and the family have been showered with support, particularly by a group of kids Evan met at Ronald McDonald House.
“My dad and I were hungry,” said Evan. “We went to the cafeteria to get a sandwich or something and there was a group of kids cleaning with brooms and mops.”
According to Evan, the kids “dropped everything” and asked him to play ping pong.
“Patti, the leader said, ‘I think this boy would like to play’, and she sent them to play with me,” said Evan. “And the next day, they asked me to be a part of their group.”
The group, known as Pacesetter Youth Camp, is focused on inspiring youth today to become leaders of tomorrow. Evan joined them during the summer performing community service after his treatments.
“I’d have my treatment in the morning and then go meet up with them,” said Evan.
According to Linda, the group is run by Patti Seda expressed her gratitude toward Patti and the children when describing the impact they have had on Ethan.
“Patti and the kids have been wonderful,” said Linda Taylor. “Not only have they become very close friends, they’ve been very strong support system.”
One year update
Despite losing his hair for the second time and much of the strength in his fingers and feet, Evan remains positive.
“He hasn’t been real sensitive about not having his hair,” said Linda Taylor. “He just smiles and goes on.”
Linda said Evan’s classmates at St. Malachy School have been very supportive.
“They encourage him,” said Linda. “If he’s been gone a day, they are always excited to see him the next day. That helps because he’s excited to get back to school. Evan’s not worried what they are going to say, so that makes it easier for him going back.”
Evan and his parents continue to make the weekly trip to Iowa City for chemotherapy and occasional transfusions. Evan currently receives two different chemotherapies, alternating each week.
“Evan has been absolutely incredible,” said Linda. “He has been our strength through this whole process. He just has a very positive attitude. He’s always cracking jokes, and I think it has helped him.”
Linda said she is most overwhelmed by the support from the Creston community.
“The people that you meet, that you don’t feel you know real well have come forward and helped out,” said Linda. “Whether it was bringing something to the house, stopping by to see how they can help.”
She admitted being on the receiving end is difficult.
“I enjoy organizing and helping others out,” said Linda. “It’s been hard for me to be on the receiving end of it. It’s humbling. But I am very, very, very thankful for all the support. It kind of puts things in perspective, to really understand what families go through day to day when they are dealing with someone that has cancer.”
“One thing I want to add is, it’s hard to thank everyone,” she said. “I can’t keep up. I just want people to know how much they are appreciated.”
With medical bills mounting, friends, family and community supporters are coordinating a fundraising effort to help alleviate some of the financial burden.
Myrna Beving, who works with Linda at Rieman Music, is encouraging everyone to attend a fundraiser 5 to 7 p.m. Friday at the Eagles Club.
“There will be entertainment by Joyful Noise and Musically Inclined,” said Beving. “We’ll have an auction with donated items, giftcards and some handmade crafts and food items, too. It will be a great event.”
For information and donations contact Beving at 641-340-0281 or Shelly Carter at 641-202-1471.